Jennifer Gledhill reports on a new psychology-led film around cancer, ‘They just don’t know what to say or do’.
29 April 2024
Alife with cancer can be a lonely experience, especially if your loved ones avoid talking about it. A new film aims to address this by educating all of us about what people living with secondary, advanced breast cancer need from their support network.
Over 81,000 people in the UK are living with advanced breast cancer and support from family and friends is crucial at such a difficult time. However, findings from Sussex Health Outcomes Research and Education in Cancer (SHORE-C) group at the University of Sussex reveal that often people don’t know how to respond to their loved one after their diagnosis. In the film, They just don’t know what to say or do, Dame Lesley Fallowfield, Professor of Psycho-oncology and Director of SHORE-C, speaks to Lesley Stephen who has a diagnosis of secondary breast cancer. They hear the voiced experience of participants in SHORE-C’s research, to pinpoint the dos and don’ts of support…
DON’T provide false reassurance
“When family try and tell me things will be fine each time I’m waiting for a scan,” says Lesley, “I really hate it. While you want to stay hopeful as a patient, you need to be realistic, this disease cannot be cured. It’s like they’re trying to be hopeful and positive for themselves.” Participants also reported an unwillingness from family to accept a diagnosis and often felt like loved ones were burying their heads in the sand, with one explaining, “My sister is not willing to talk about the end of life. I find this very frustrating because I have to discuss it with someone.”
DO listen
Participants agreed that listening was the biggest gift their family and friends can give. Responses including, “My husband is always there with big hugs and he’s ready to listen when I’m upset.” And, “My sister listens to me talking about my cancer, she doesn’t ignore it.”
DON’T run away
One participant reported seeing two friends cross the road when they saw her, and another said her friends avoided using the ‘C’ word. They reported that it closed them off from being honest about their emotions. Others felt dismissed with certain phrases, with one saying her friend said, ‘Oh, we could both be under a bus tomorrow.’
DO allow tears
“Just being there for me, listening, laughing, crying. It’s just so, so important,” said one participant. “I so value those friends who just give me a text or come over and give met the biggest hugs and make sure I’m okay when I don’t want to cry in front of my kids.”
DON’T give inaccurate advice
“In our survey, we were struck by how many people said their family and friends gave well-meaning, but often inaccurate advice,” says Prof Fallowfield. “some participants reported being told to ‘change their diet’ or ‘give up dairy’”. “A hyperbaric oxygen therapy session or an infra-red sauna is not going to cure my cancer,” adds Lesley.
DO suggest patient support groups
Lesley reported that the women she met in a support group organised by a cancer charity were amazing; “they gave me advice on dealing with the side effects of treatments and we also had a laugh. I think it was the best thing I ever did when I was first diagnosed.”
DON’T wrap them up in cotton wool
“At times people can just be too protective,” says Lesley, “I hate it when they tell me to ‘take it easy,’ the drugs do cause quite a lot of fatigue, but I really don’t like to be told what to do. I know when I need to take a rest.” Prof Fallowfield adds that it can be tricky for people to know when their loved ones need help, and Lesley agrees that she finds it best to ask for help when she needs it and to be quite clear about what will be useful.
DO think about practicalities
Professor Dame Fallowfield agrees with Lesley, “our survey kept hearing about people making assumptions about what’s going to help. Patients told us about the benefits of practical support, such as filling the freezer, helping with the children and taking the dog for a walk.”
DO work through your own feelings about your loved one’s diagnosis
“Often, when friends and family make unhelpful suggestions on how to manage the disease or report on a miracle cure, they’ve seen on the internet, they're probably demonstrating that they cannot believe that there isn't something out there that could help,” says Prof Fallowfield. “It may be well-meaning but it’s not a good idea.”
DON’T use a ‘pity’ voice
“We don’t want a sense of pity from someone,” says Lesley, “that kind of side tilt to the head combined with a ‘how are you?’ really isn’t helpful. “One of the most important things family and friends can do is to just listen, recognise what the person is feeling at that moment in time. Try and walk in their shoes and put yourself in their situation. Just let them know you’ll be by their side through thick and thin.”Watch the film now. Our editor Jon Sutton has interviewed Professor Dame Lesley Fallowfield about this work and more; watch this space.(https://www.bps.org.uk/psychologist/what-say-and-do-or-not-when-someone-tells-you-they-have-cancer-0)
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